Sleep Study Time

Living On Oxygen for Life

There are different reasons for a person who may require a sleep study. Sleep Apnea is one of them. I’ve had quite a few sleep studies dating all the way back to 1993. Even though I was already on oxygen at night only, my lungs couldn’t work well enough while I slept to blow off the CO2 that my body was retaining. My breathing was too shallow. I would have really bad dreams and I’d stop breathing while I slept most nights and the problem was only getting worse.

I was seeing a Pulmonologist in Dallas, TX, in 1993, who realized that my scoliosis played a large role in my breathing problems. Because my ribs are so deformed from my scoliosis-curved spine, it reduced the lung capacity that I had to breathe. Twenty-four years ago, my lung volume was approximately 25% of what a normal, healthy person my current age back then. Today, it measured at 16% at my annual physical. So, over the span of 23 years, my lung capacity has lost about 1/3rd of it’s former volume. Now, if you add the complication of Pulmonary Hypertension to the mechanical difficulties of Restrictive Lung Disease (from my deformed ribs due to Scoliosis), my health becomes difficult to treat. Now, add heart complications. I was born with an ASD (closed on its own) and an VSD (surgically repaired at the age of 10 years old) but also currently have trouble with Ventricular Tachycardia & SupraVentricular Tachycardia. This is the challenge my doctors face. How do you treat one problem without it affecting the others? The answer? Very, very careful trial and error. I make myself heard and understood. I carry test results from one doctor to all my other doctors. We are a team.

So, when I was starting to have a noticeably difficult time breathing earlier this year, I decided to systematically figure out what is causing this large step back in health. I started with my PH doctor. Then went to my Electrophysiology-Cardiologist. After that, I went to my family doctor to bring him up to date. Next, I went to my Pulmonologist who follows my bipap machine. We set up a sleep study. Not my favorite thing to do. I hadn’t had a sleep study since 2009. Maybe I just needed my bipap setting tritrated and that would solve everything… but I don’t think it will. I’m still thinking it has to do with Tikosyn.. the new cardiac medicine I started taking in place of Cordarone.

Next week… I see my normal cardiologist for an ECHO and to ask for a second opinion about this Tikosyn. I’m not giving up until I’ve tried everything to figure out what triggered this breathing setback. I don’t want this to be my new normal. Sure, it’s nice that K does all the grocery shopping on his own but sometimes we have fun together doing it. It just makes me too tired now.

If you’ve never had a sleep study done and you’re curious about them because you have been told you need one, well, wonder no more!

SleepStudy

Here I am all wired up for my sleep study. There are a LOT of wired that are attached to your head, arms, upper chest, and legs. Don’t forget a few weird places like under your chin and next to your eye. Those get a little itchy! You also get an upper chest band and an abdomen band that monitors your breathing. I was able to bring my 3 pillows that I use and my own bipap mask because I already use a bipap. There is a dress code for pajamas. Some sleep studies are done in the hospital and some are done in a stand alone building. If you are to have a sleep study and you use oxygen 24/7, be sure to mention that and take a tour of their “bedrooms.” If you are doing a sleep study outside a hospital and you use a high flow of oxygen 24/7, like me, make sure they can accommodate your oxygen needs. I had to bring my splitter so that I can use two oxygen concentrators together; each set at 3LPM to be able to have enough oxygen while doing my sleep study.

Once you are in your sleep study, if you are having trouble breathing or with the mask they gave you to try, speak up. Let the technician know what’s going on. They’ll try to help as much as they can according to the doctor’s orders. Make sure you understand what your doctor wants to try during the sleep study before you have your sleep study. They really want you to be comfortable so that you can sleep as best as you can. Tell them how you sleep in bed. They’ll want you to try to sleep on your back for a while but my tech let me roll over (which was pretty hard to do with all the wires!) onto my stomach to try to fall asleep.

Seriously, I’d love to hear your comments, experience and advice for future sleep study patients. I know that the Bipap or Cpap machines can be a challenge at first to get use to but, once you do, they can help by improving the quality of your life… at least your sleeping life. *wink* My bipap machine has kept me alive for the last 23 years. I’m glad I didn’t give up on mine.

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14 thoughts on “Sleep Study Time

  1. Christine, when you have time check out the Trilogy, it is a machine that replaces the bipap and helps clear the co2 even better. Is relatively new and gets rave reviews by users. Let me know if this info is helpful.

    • I’ve checked out the Trilogy and I thank you for bringing this up! ☺️ From what I understand, it’s a ventilation system that can run on battery power (6 hour battery life) for those who are still mobile (via wheelchair or otherwise) and need bipap like ventilation during daytime hours. Is my understanding correct? ☺️

      • I needed pressures higher than I could get from my bipap machine last year, so I graduated to a ventilation system. The one that worked for me was the Resmed Astral 150. It works like my bipap, but with higher pressures. I also went from needing 4 lpm at night with the bipap to 2 lpm with the Astral 150. It runs on electricity, but does have 8 hours of battery back-up, so if the electricity goes out, it continues to work. I tried a couple different systems before this one, but this is the only one I could tolerate. I was told it was the “caddlilac” of ventilators, whatever that means!

  2. It’s amazing how similar our stories are. I’ve also had multiple sleep studies over the years. My first one was in 1984! I started on bipap in 1992. I have to say it saved my life. I really hate sleep studies, but understand it is a necessary test. I never feel that I sleep at all during the study, but they always tell me otherwise, and seem to get the information needed. I always go home and go to bed afterward! The adjustments they recommend usually result in my getting a better night sleep and then feeling better during the day. It is important to discuss the sleep study beforehand with your physician so you know what they are trying to accomplish and what you should expect during the test. It’s an annoying test, but at least it’s not painful!

    • Our stories are very similar! Cindy, would you recommend to those who are about to have their first sleep study, to have someone drive them home? I ask for your opinion because of your similar experience. I think a person with breathing problems needs to be alert to drive a vehicle and if you didn’t sleep well during the sleep study (or any night of sleep), a person must be able to recognize the warning signs of not being alert enough to drive and know when it’s not safe to drive. What do you think?

      • That’s a good question. I have to say I’ve always driven myself home after my sleep studies and never really felt unsafe to do so. The sleep center never suggested to have someone pick me up, either. I agree with you, however, that no one should drive if they do not feel entirely alert. Arranging to have a ride after one’s first sleep study would not be a bad idea, if they aren’t sure how they’re going to feel.

  3. My first bipap machine was in 1995. I was crashing machines at work and very close to getting fired. I also fell asleep several times on way home and didn’t realize at the time what was happening. My wife talked me into getting a sleep study and I stopped breathing an average of 45 times an hour! People were talking of dreaming and I just didn’t dream. After the machine, I had a lot of wild dreams.
    Now most of the time I take naps I have the machine on unless the sleep sneaks up on me. I couldn’t live without it. The sleep study is just a necessary evil that we have to do.

  4. I have had three sleep studies done in the last three years. One inpatient in the hospital, one at a sleep lab, and one at home. Of course I liked the home one the best because it is not as uncomfortable, but if you want to have a more conclusive, I think the sleep lab is the way to go.

  5. I looked up the last couple co2 tests and I’m at 30-with the norm 21 to 32. My last 13 1/2 years of work was on third shift-10:30 pm to 6:30 am so my sleeping schedule was messed with at the beginning. I’ve been retired since 2007. Since then it is just natural for me to take a nap in the afternoon for which I do the bipap. The last time I checked with the pulmonary dr and took the SD card in, she said a 5 on what ever scale they use was very good. Mine was at 4.3 and she said I’m great there!
    The last sleep study I did, I asked about a different mask because of colds or allergies. It was like a circus trying on different masks. None of them worked- so I was back to my original nasal pillows very comfortable and no leaks!

      • Yes. It is all night with my 2 l of oxygen. I always use the humidifier and some times I use half the water and others like this morning it was dry! I’ve talked to others and they say teh same thing. Before the oxygen I was sleeping an average of 5 hours per night and now it is 7 hours because of the oxygen level dropping of to 70.
        I have no idea what she means by the numbers, but whatever they are I’m doing good!

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